Explanation of physical and self-concept dimensions in Spouses of Patients with Major Thalassemia Based on Roy's Theory: A Qualitative Content Analysis Study

Explanation of physical and self-concept dimensions in Spouses of Patients with Major Thalassemia Based on Roy's Theory: A Qualitative Content Analysis Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Article Explanation of physical and self-concept dimensions in Spouses of Patients with Major Thalassemia Based on Roy's Theory: A Qualitative Content Analysis Study Mobin Rahmati, Mahin Behzadifard, Alireza Momeni, Marzieh Beigom Bigdeli Shamloo This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6538359/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background and Objective: Major thalassemia is a congenital blood disorder caused by a defect in the hemoglobin chain, leading to anemia and increased iron load, which can affect all organs. The complications arising from thalassemia impact various aspects of the patient's life. Spouses, as informal caregivers, need to adapt to their partner's condition to enhance their quality of life. This study aims to Explanation of physical and self-concept dimensions in spouses of patients with TM in Dezful County. Methods: In this guided content analysis based on Roy's theory, in-depth interviews were conducted with 12 eligible participants regarding their adaptation experiences. The researcher recorded and transcribed their responses. After multiple readings of the participants' statements, codes were extracted and organized into subcategories, generic categories, and main categories based on semantic proximity. Content analysis was performed using the methods of Elo and Kyngäs, with a back-and-forth approach between inductive and deductive reasoning. Findings: 2 main categories emerged from the data analysis: physical, self-concept. Additionally, 15 generic categories, 37 subcategories, and 105 codes were extracted, resulting in 147 unique codes after removing duplicates. Conclusion: This research revealed that spouses who are themselves affected by TM experience greater physical and psychological challenges that highlighting the necessity for effective policies to provide comprehensive support for patients and their spouses. Clinical trial number: not applicable. Health sciences/Diseases/Haematological diseases/Anaemia Health sciences/Health care/Quality of life Major thalassemia adaptation content analysis spouses Introduction Thalassemia is a hereditary disease caused by a deficiency in the production of globin chains, leading to ineffective erythropoiesis and hemolysis(1). Thalassemia has varying prevalence across different countries. In Mediterranean countries, the prevalence has increased in Europe and the USA due to migration from the Middle East and Far(2) East. Iran is situated in the thalassemia belt, with 17,342 out of 18,983 hemoglobinopathy patients suffering from TM(3). Notably, 14% of the population over 15 years of age among these patients are married(4) Damage to the heart, liver, lungs, and endocrine organs occurs due to anemia and iron overload. Anemia and iron accumulation also harm the endocrine organs, leading to hypogonadism and reduced sperm and egg production, necessitating interventions for fertility issues. Additionally, patients may face psychological and social problems due to the congenital nature of the disease and its longevity. The psychosocial challenges and treatment burdens for thalassemia patients are significant(5). Studies indicate that 19.8% of thalassemia patients in Iran suffer from depression, and 23.7% experience anxiety disorders(6, 7). Other research shows that these patients live in constant anxiety(7), driven by fears of the future, stigma, and conflicting treatment opinions, leading to physical and psychological dysfunction that requires social and medical support(8). One of the interventions gaining attention in the care of chronic disease patients is the focus on adaptation strategies(9). Adaptation involves continuous changes and cognitive and behavioral efforts to manage internal or external demands, reflecting the reciprocal influence between individuals and their environment. It is described as a process with adaptation as the outcome of this process. During adaptation, an individual's personal perspective on their surroundings is re-established, fostering a meaningful and positive outlook on life(10) Adaptation is a cognitive process that guides individuals through various needs and challenges following illness, taking place within a social context (11). Both stressors and adaptation variables impact their quality of life. Moreover, employing coping strategies by spouses enhances the adaptation process for patients. Studies have shown that TM patients exhibit maladaptive behaviors affecting their mental health and that of their families. This disease also negatively impacts family members, causing psychological, social, financial, and even physical harm(12). Families, due to the chronic nature of the disease, treatment methods, complications, and mortality associated with the disease, experience burnout(13). Although there is limited research on the adaptation challenges faced by spouses of TM patients, studies indicate patients' distress regarding their treatment leads to maladaptive behaviors(14), with spouses being the most affected individuals. Evidence suggests that adaptation interventions significantly impact the quality of life for both patients and their spouses. Furthermore, according to Roy's theory, caregivers, including spouses and families, should be the focus of care and treatment interventions. Exploring coping and adaptation strategies for patients and their families in chronic illnesses can help develop solutions to enhance their quality of life across physiological, role playing, interdependence, and self-concept dimensions(15). By examining physical and self-concept dimensions, healthcare providers can facilitate patient acceptance and encourage positive coping strategies. Early interventions related to adaptation can lead to better disease management. Therefore, healthcare providers involved in fostering adaptation in these patients need to clarify the physical and self-concept dimensions in their spouses to gather precise information for necessary planning and actions. Materials and Methods This qualitative study utilized guided content analysis conducted in 1403 at the Thalassemia Ward of Ganjavian Hospital in Dezful. After obtaining permission from the Research Vice-Chancellor of Dezful University of Medical Sciences and submitting it to the hospital director, patients with TM were selected based on inclusion criteria. Purposeful and convenient sampling with maximum diversity regarding age, education level, ethnicity, etc., continued until data saturation was reached. Inclusion criteria for spouses and patients included proficiency in Persian, at least one year of marriage, and adequate physical and mental condition to participate in the interview. Inclusion criteria for therapists included a minimum Bachelor's degree in Nursing or Psychology or a Doctorate in Hematology, with at least one year of experience working with thalassemia patients for those with a Bachelor's degree. Exclusion criteria for patients and spouses included lack of physical or mental readiness to participate in the interview and unwillingness to continue cooperation. Exclusion criteria for therapists included unwillingness to cooperate. After explaining the purpose of the study, methodology, and ensuring that participants would not be deprived of their treatment if they chose not to cooperate, informed consent was obtained. Interviews were conducted with 11 participants, including TM patients, their spouses, and nurses who met the inclusion criteria. The interviews began with the question, "How did you adapt to your spouse's illness?" Follow-up questions included: "What physical problems have you experienced?", "How about your mental state? ".Probing questions were asked based on participants' responses to better understand their experiences. To analyze the data, qualitative content analysis using a guided approach based on Roy's theory was employed. Content analysis began immediately after the first interview. The researcher listened to the interviews multiple times and then transcribed them. Analysis commenced with repeated readings of the entire text to immerse in the data and gain an overall sense of it. The researcher aimed to understand the essence of what was expressed in the raw data. Subsequently, to describe and interpret the perceived meaning, the researcher began coding word by word, line by line, or paragraph by paragraph, allowing concepts to emerge from the raw data based on their features and dimensions. The coding and classification of data were not limited to the 2 dimensions of Roy's theory (physical, self-concept) and involved continual oscillation between deductive and inductive reasoning. The primary data collection method in this study was semi-structured interviews. Interviews were conducted individually in a calm environment at a suitable time and place (the Thalassemia Clinic training room) where participants felt comfortable. When data saturation was reached, two additional interviews were conducted for further assurance. To ensure the validity and reliability of the data, Lincoln and Guba's criteria were employed(16). Prolonged engagement with the topic, participant validation, peer debriefing, and triangulation (using multiple methods for data generation, including interviews and field notes) were utilized to enhance credibility through rich and deep descriptions of the data and an audit trail. All research processes were thoroughly documented. Transferability and Trustworthiness To enhance transferability, detailed descriptions of the research context, transcripts, and observed processes were provided to allow for judgment and evaluation by others regarding the applicability of findings. To ensure the accuracy and credibility of the research findings, feedback was sought from participants. The themes derived were returned to participants to confirm whether they accurately reflected their experiences related to adaptation. All themes were validated. Additionally, coding and data analysis were conducted independently by researchers and collaboratively to ensure agreement on the themes. In reflectivity, it is important to note that the researcher was aware of the problems of thalassemia patients due to her background in caring for them. While efforts were made to minimize the influence of personal biases during data collection and analysis, the researcher acknowledged that achieving complete objectivity was challenging. To enhance the validity of the findings, the data analysis was reviewed and validated by a co-researcher with extensive experience in qualitative research. The aim of this collaborative approach was to reduce potential biases and ensure more accurate interpretation of the data. To protect the participants emotionally, they first prepared themselves and the participant and explained the purpose of the research. Also, the participant's trust and confidence were gained by introducing the interviewer. During the interview, skills such as active listening and feedback were used by the interviewer, and the interviewer tried to empathize with the participant, and the interviewer managed emotions. The participants were assured that if they needed psychological counseling, they would definitely be referred to a counselor at the researcher's expense. This article is the result of a research project that was approved by the Research Vice-Chancellor of Dezful University of Medical Sciences with the code of ethics IR.DUMS.REC.1403.049049 and it is in accordance with the Declaration of Helsinki. Written informed consent was obtained from all participants. Findings 12 participants took part in this study: 1 caregiver (8%), 4 patients (33.5%), and 7 spouses (58.5%). The average age of participants was 35.4 years, with 6 (50%) being female and 6 (50%) male. Educational levels were as follows: 5 individuals (40.5%) had secondary education, 5 (40.5%) had diplomas, and 2 (19%) had university degrees. Their occupations included 1 (8%) freelancer, 4 (33.5%) housewives, 4 (33.5%) workers, and 3 (25%) employees. Among the 11 patients and spouses, 8 (70%) had spouses with thalassemia, while 3 (30%) had healthy partners. On average, couples had been married for 7.3 years, with 5 (45%) being childless and 6 (55%) having one child(Table 1 ). Table 1 Demographic Characteristics of Participants No. Age Gender Education Level Occupation Role Duration of Marriage Number of Children Spouse with Thalassemia? 1 55 Female Bachelor's Nurse Caregiver ---- ------ ----- 2 26 Female Diploma Housewife Patient 1 0 No 3 39 Male Diploma Shopkeeper Spouse 2 0 Yes 4 31 Female Diploma Housewife Spouse 3 0 Yes 5 35 Male Secondary Freelancer Spouse 7 0 Yes 6 35 Female Diploma Housewife Spouse 7 0 Yes 7 38 Female Associate Degree Private Employee Spouse 12 1 Yes 8 46 Male Diploma Private Employee Spouse 11 1 Yes 9 28 Male Secondary Worker Patient 8 1 No 10 38 Male Secondary Worker Patient 20 1 Yes 11 38 Male Secondary Worker Patient 6 1 Yes 12 36 Female Secondary Housewife Spouse 7 1 No From the content analysis of the conducted interviews, 2 main categories emerged: physical, self-perception. Additionally, 15 generic categories, 37 subcategories, and 402 codes were extracted, which, after removing duplicate codes, left 105 codes. In the main physical category, generic categories included activity and rest, absorption and excretion, cardiovascular, respiratory, neurological, immune system, skin and hair, glands, and musculoskeletal systems (Table 2 ). In the generic category of activity and rest, two subcategories of sleep and mobility were identified. In the sleep subcategory, codes for insomnia, frequent waking, and nightmares were extracted. In the mobility subcategory, codes for weakness, fatigue, lethargy, and inability to perform heavy tasks were extracted. Participant No. 3: "Because of anemia, I get tired quickly, especially when I’m close to my next blood transfusion. My parents manage my brain." In the generic category of absorption and excretion, subcategories of absorption disorder, dietary habits, bowel movements, and water and electrolytes were identified. In the absorption disorder subcategory, codes for weight loss, loss of appetite, and increased iron absorption were extracted. In the dietary habits subcategory, codes for reduced consumption of iron-rich foods, reduced consumption of vitamin C-rich foods, and increased consumption of dairy products were extracted. P. 4: "We only eat red meat once a week." In the bowel movements subcategory, codes for diarrhea and constipation were extracted. P5: " I mostly suffer from constipation." In the water and electrolytes subcategory, codes for thirst, calcium deficiency, high serum phosphate, iron overload, leg swelling, and discontinuation of Desferal during pregnancy were extracted. P4: "The doctor told me that my iron levels should be regulated before pregnancy because we have to stop it during pregnancy." In the generic category of cardiovascular, three subcategories of vessels, heart, and blood were identified. In the vessels subcategory, codes for hypotension, difficulty accessing veins, cerebral vascular occlusion, and coronary artery occlusion were extracted. P3: "Even though I’m 39, I’ve had a stroke, and my right side is paralyzed." In the heart subcategory, codes for tachycardia, heart pain, heart failure, and cardiomyopathy were extracted. In the blood subcategory, codes for reduced red blood cell lifespan, frequent blood transfusions, and anemia were extracted. P12: "Because of my anemia, I have to come every month for a blood transfusion." In the generic category of respiratory, two subcategories of pulmonary problems and breathing pattern disorders were identified. In the pulmonary problems subcategory, codes for pulmonary hemosiderosis and pulmonary hypertension were extracted. In the breathing pattern disorders subcategory, codes for shortness of breath, inability to breathe deeply, and increased respiratory rate were extracted. P8: "I can’t do my tasks quickly because I run out of breath." In the generic category of neurological, two subcategories of somatic pain and sensory reception disorders were identified. The somatic pain subcategory included codes for leg pain, back pain, abdominal pain, and headache. P12: "When I see my husband suffering, my headache gets worse. I have migraines." The sensory reception disorders subcategory included codes for tingling in the extremities, warmth in the extremities, numbness in the extremities, and hemiplegia. P7: "When I work, my hands tingle." In the generic category of the immune system, two subcategories of humeral and cellular were identified. In the humeral subcategory, codes for pneumococcal and meningococcal vaccination, reaction to blood transfusion, susceptibility to infectious diseases, and sensitivity to Iranian Desferal were extracted. P8: "Every year in September, we get pneumococcal and flu vaccines because our immunity is low." In the cellular subcategory, codes for susceptibility to cancer and increased likelihood of transplant rejection were extracted. P1: "Although most of our patients die from heart and liver failure, the rate of cancer among them is also higher than in the general population." In the generic category of skin and hair, two subcategories of skin and hair were identified. In the skin subcategory, codes for skin darkening and dry skin were extracted. In the hair subcategory, codes for hair loss and thinning hair were extracted. P7: "I don’t like the color of my skin because it has turned brown." In the generic category of glands, two subcategories of endocrine and exocrine glands were identified. In the endocrine subcategory, codes for diabetes, decreased libido, ovulation disorders, reduced sperm motility, oligospermia, and menstrual disorders were extracted. P10: "My wife has diabetes." P12: "I had ovulation problems, so I took medication to get pregnant." In the exocrine subcategory, codes for liver failure, elevated liver enzymes, hepatomegaly, and splenomegaly were extracted. P8: "I get blood tests every month because my liver enzymes are high." In the generic category of musculoskeletal, two subcategories of muscular and skeletal systems were identified. In the muscular subcategory, codes for muscle cramps and muscle pain were extracted. P3: " When I wake up, my legs cramp." In the skeletal subcategory, codes for osteoporosis and enlargement of flat bones were extracted. P1: " Most of our patients have wide faces and foreheads." In the main category of self-perception, generic categories of physical self, interpersonal self, mental self, ideal self, and spiritual-ethical self were identified. In the generic category of physical self, two subcategories of experiencing physical weakness and body dysmorphia were identified. In the experiencing physical weakness subcategory, codes for fatigue from frequent blood transfusion sessions and feeling of energy loss were extracted. P11: "My energy runs out quickly, and I get tired." In the body dysmorphia subcategory, codes for feeling boxy-faced and skin darkening were extracted. P7: "I feel very ugly because my face is rectangular and wide." In the generic category of interpersonal self, subcategories of unempathetic behavior and social withdrawal were identified. In the unempathetic behavior subcategory, codes for being mocked by others and lack of understanding of physical and mental conditions were extracted. P7: " At work, whenever my boss pays more attention to me or gives me overtime, my colleagues say, 'Oh, because of your illness, they’re giving you this money!'" In the social withdrawal subcategory, codes for covering skin color with makeup, using face masks, and reluctance to attend social gatherings were extracted. P3: "Most of the time, I wear a mask, even when I come to the clinic for a blood transfusion. I draw the curtains so no one sees me." In the generic category of mental self, subcategories of instability, low self-esteem, anxiety, experienced attitude, grief, fear, maintaining stability, and accepting the issue were identified. In the instability subcategory, codes for expressing anger towards parents and irritability were extracted. P3: " When I get very upset, I yell at my parents and say, 'It’s your fault I was born and have to suffer so much .'" In the low self-esteem subcategory, codes for self-defeat and self-deprecation were extracted. P4: " The way thalassemia is viewed in our country is so negative that we’ve lost ourselves." In the anxiety subcategory, codes for worry about the future of the disease and its consequences in the patient and concern about ambiguity in treatment in the country were extracted. P4: "I’m always worried about what will happen if our medications aren’t imported and we can’t buy them. " In the experienced attitude subcategory, codes for simplistic view of thalassemia major, ignoring the patient’s abilities, and instrumental view in national productions were extracted. P6: " They’ve turned us into their lab rats under the name of national drug production, selling us their drugs that have no effectiveness." In the grief subcategory, codes for distress over treatment side effects and distress over economic pressure were extracted. P. 7: "Every time I go to buy medication, it’s more expensive. It’s really upsetting." In the fear subcategory, codes for fear of social instability during continued treatment, fear of the disease and its complications, and fear of not being able to afford medication were extracted. P3: " I always have this fear that our medications won’t be imported, or we won’t be able to buy them." In the maintaining stability subcategory, codes for introversion and avoiding rumination on sorrow were extracted. P11: "My wife doesn’t bring anything up to me." In the accepting the issue subcategory, codes for accepting the disease and its complications and surrendering to fate were extracted. P12: " When I tested positive, I accepted the condition because it was like me." In the generic category of ideal self, subcategories of advancing health and seeking love with a world of health were identified. In the advancing health subcategory, codes for achieving desired health and maintaining maximum efficiency were extracted. In the seeking love with a world of health subcategory, codes for wishing for health in the future and wishing to live happily were extracted. P7: "I always wish for health and happiness for all people and for ourselves." In the generic category of spiritual-ethical self, two subcategories of spiritual care and transcendence of values were identified. In the spiritual care subcategory, codes for strengthening the spiritual dimension through reliance on God and the Imams and avoiding spiritual dryness were extracted. In the transcendence of values subcategory, codes for valuing health and valuing family were extracted. P2: "My husband cares a lot about me and spares no effort to achieve my health." Discussion A review of previous studies indicates that most research has been conducted on thalassemia patients (TM) and their parents, suggesting that, given their potential for marriage, their spouses have been overlooked. The expectation of having a family is an important component and a noble goal for a better quality of life for most adults with beta TM. Additionally, therapeutic advancements have led to significant increases in survival rates and improvements in the quality of life and fertility of patients with beta T(17). In the current study, some spouses who themselves suffer from TM experienced sleep disorders such as insomnia, frequent awakenings, and nightmares. Other studies have shown that the quality of sleep in these patients is lower than that of the general population and is directly related to general health(18). Factors such as high ferritin levels and heart failure exacerbate insomnia(19). Furthermore, some spouses with TM reported weakness, fatigue, and inability to perform heavy tasks, attributed to iron overload(20). Additionally, changes in the nasal and facial bones can lead to sleep apnea for them(21). Moreover, in this study, all spouses who were themselves affected by TM suffered from increased iron absorption, and some experienced weight loss and loss of appetite secondary to iron overload. Studies have indicated that malnutrition is commonly present in TM patients, manifesting as deficiencies in calcium, vitamin D, vitamin E, and zinc, leading to reduced muscle mass, decreased bone density, and short stature(22). In the current study, all spouses affected by TM adhered to dietary restrictions, reducing the intake of iron-rich foods, limiting vitamin C-rich foods, and increasing dairy consumption to prevent further iron absorption and slow down the process of osteoporosis. Some spouses reported constipation as a delay in bowel movements. Thalassemia patients have biliary motility disorders with delayed small bowel transit due to iron overload(23). The present study also noted changes in water and electrolyte levels in spouses with TM, primarily manifesting as hypocalcemia and iron overload. Studies have shown that one of the complications of thalassemia is hypocalcemia, which presents with paresthesia, muscle spasms, and low serum calcium. Iron overload, drug side effects, vitamin D3 deficiency, genetic disorders, and polymorphisms are causes of hypocalcemia(24). In some cases, they also complained of leg edema, which could be due to hepatomegaly, splenomegaly, liver failure, and heart failure(25). In female spouses with TM who had given birth, discontinuation of desferrioxamine during pregnancy was experienced. However, serum iron control was performed before pregnancy. Studies indicate that the use of deferoxamine in the first trimester does not cause adverse effects on the fetus, but emphasize its greater benefits for the mother over its fetal side effects(26). If chelation therapy is discontinued during pregnancy, it should be resumed after childbirth, as the risk of iron accumulation in the liver and heart increases during pregnancy(27). In the current study, vascular problems were experienced by some spouses with TM, manifesting as cerebral and coronary artery occlusions. Ischemic cerebrovascular events in thalassemia patients are categorized into overt strokes and silent cerebral infarcts. Overt strokes often occur in patients with beta TM(28). Additionally, thromboembolic events in non-transfusion-dependent thalassemia are more frequent than in transfusion-dependent beta thalassemia. A combination of hypercoagulable states, including abnormalities in red blood cells and platelets, antithrombin III, protein C and S, and splenectomy, are involved in thrombotic events. Moreover, neurological complications attributed to various factors include chronic hypoxia, iron overload, bone marrow expansion, and neurotoxicity from desferrioxamine(28). Neuropathy and myopathy, along with a predisposition to hypercoagulation, lead to strokes and cardiac events(29). In the present study, cardiac problems in some spouses with TM manifested as tachycardia, chest pain, heart failure, cardiomyopathy, and arrhythmias. Studies have shown that cardiac complications are a leading cause of mortality in β-TM patients, although significant and progressive increases in life expectancy have been demonstrated following the introduction of chelation therapies. Iron overload is the primary cause of cardiac damage, leading to thalassemia cardiomyopathy, where diastolic dysfunction typically occurs before systolic dysfunction and overt heart failure(30). Although iron-induced cardiomyopathy progresses slowly and may take several decades for clinical and laboratory features of cardiac dysfunction to become apparent, arrhythmias or sudden death may occur without signs of heart disease, and only in the presence of myocardial siderosis(31). In the current study, blood-related issues in some spouses with TM manifested as anemia, necessitating repeated blood transfusions. This is due to the pathology of the disease. Thalassemia is an inherited hematologic disorder characterized by reduced or absent synthesis of one or more globin chain types. Beta thalassemia results from one or more mutations in the beta-globin gene. The absence or reduction of beta-globin chains leads to ineffective erythropoiesis, resulting in anemia. TM can be treated through regular blood transfusions, bone marrow transplants, iron chelation management, hematopoietic stem cell transplants, stimulation of fetal hemoglobin production, and gene therapy(32). In the current study, respiratory issues in some spouses with TM manifested as shortness of breath, pulmonary hypertension, and pulmonary siderosis. Patients with β-TM may accumulate iron in the interstitial area of the lungs, potentially leading to fibrosis and lung dysfunction over time. The majority reported a restrictive pattern of respiratory dysfunction in thalassemia patients. Additionally, some studies have indicated mild to moderate obstruction in small airways and reduced diffusion capacity with increased thickness of the alveolar-capillary membrane in older ages, gradually reducing the respiratory capacities of these patients.(33) Neurological issues in some spouses with TM included limb pain, abdominal pain, numbness, paresthesia, and plegia. Pain is a newly emerging complication in thalassemia. Limb pain may arise due to vitamin D deficiency and arthropathy(34). Furthermore, thalassemia patients are at risk of developing cholelithiasis, portal vein thrombosis, mesenteric artery thrombosis, nephrolithiasis, and Yersinia infections, which can cause abdominal pain(25). Additionally, extramedullary hematopoiesis, sensory, auditory, and visual stimulation, neuropathy, myopathy, and a predisposition to hypercoagulation can lead to strokes in these patients, leaving behind signs of paresthesia and plegia(29). In the current study, immune system function in spouses with TM was altered, making them susceptible to infectious diseases, prompting them to receive annual vaccinations such as influenza and pneumococcal vaccines for prevention. Studies have shown that abnormalities related to beta thalassemia in the innate immune system include reduced levels of complement, properdin, and lysozyme, decreased absorption and phagocytic capacity of polymorphonuclear neutrophils, chemotaxis disorders, and alterations in intracellular metabolic processes, all leading to immune system weakening. The main factors contributing to such changes include iron overload, phenotypic and functional abnormalities of immune cells due to oxidative stress, chronic inflammation, multiple blood transfusions, iron chelation therapy, and splenectomy.(29). Additionally, spouses with TM in the current study experienced transfusion reactions, often due to alloimmunization, especially in rare blood group subtypes. Factors such as a lack of voluntary blood donors, poor awareness of thalassemia, absence of national blood policies, and scattered blood services contribute to a significant gap between timely supply and demand for healthy blood. In many centers, antigen testing is insufficient, even for common red blood cell antigens like CcEe and Kell, leading to increased transfusion reactions(35). In the current study, spouses with TM often experienced sensitivity to Iranian desferrioxamine or an inability to consume it. Research on the efficacy of Iranian versus foreign desferrioxamine or reactions to this medication has not been found. In the present study, spouses with TM reported experiences of skin darkening and dryness, and to a lesser extent, thinning and reduced hair density. Studies have shown that the most common finding in skin examinations of these patients is skin dryness followed by pigmentation disorder(36). In the current study, some spouses with TM experienced endocrine dysfunctions such as diabetes, reduced libido, ovulatory disorders, decreased sperm motility, oligospermia, and menstrual irregularities. Studies have shown that despite normal serum ferritin levels, there is a delay in puberty in these patients(37). Moreover, elevated serum ferritin levels lead to decreased levels of testosterone, estradiol, luteinizing hormone, and follicle-stimulating hormone, causing disruptions in puberty, secondary sexual characteristics, menstrual disorders, and fertility. Organized education, alongside good iron chelation, especially during puberty, can reduce oxidative damage and related complications in thalassemia patients(38). In some spouses with TM, liver dysfunctions were observed, manifesting as elevated liver enzymes, liver failure, and hepatomegaly. Elevated serum ferritin levels lead to increased liver enzymes. Furthermore, high ferritin levels cause liver siderosis, liver fibrosis, and liver failure(39). In the present study, spouses with TM experienced complications such as facial and forehead widening, osteoporosis, muscle cramps, and reduced muscle mass. Some also showed increased fat mass. Studies have indicated that increased transverse head dimensions, narrowing of the mandible, shortening of the mandible ramus, flattening of the nasal bridge, narrowing of the nasal root, orbital hypertelorism, and proptosis occur in these patients(40). In the context of osteoporosis, these patients face significant challenges, although their hyperactive parathyroid hormone makes them susceptible to osteoporosis; the likelihood of developing osteoporosis is not necessarily higher(40). On the other hand, some studies have noted a high prevalence of osteoporosis among them(41). Low levels of vitamin D and calcium can lead to muscle cramps. Other studies have also pointed to reduced muscle mass and sarcopenic obesity(42). In the current study, the self-concept category included five subcategories: physical self, mental self, interpersonal self, spiritual-ethical self, and ideal self. In the physical self, experiences of bodily weakness were reported among spouses with TM. Fatigue is recognized as a very common symptom in thalassemia patients, impacting their perceived health(43) and reducing their quality of life. Adequate nursing care and targeted socio-political interventions are necessary to help them achieve the highest possible quality of life(44). In the current study, spouses with TM sometimes described their appearance as unattractive due to having brown skin and boxy faces. The most common complication of thalassemia due to abnormal hematopoiesis is dental occlusion, forehead widening, and a squirrel-like face(45), leading them to feel dissatisfied with their appearance(46). Spouses involved in the present study reported experiencing non-empathetic behaviors and avoidance in the interpersonal self, particularly among those who themselves were affected by the disease. They experienced non-empathetic behaviors as a lack of understanding of their physical and mental conditions and being ridiculed by those around them. While thalassemia patients wishing to start a family face many challenges and require collective support from society and caregivers to lead normal lives(47). Additionally, depression, social isolation, limited access to insurance services, challenges in educational and occupational fields, and difficulties in nurturing social relationships are among the problems faced by these patients(48). Spouses in the current study often attempted to conceal their faces with masks in social gatherings or avoided attending gatherings altogether. Women also reported using whitening creams to hide skin darkening. Studies have shown that emotion-focused approaches like avoidance and distancing can enhance the quality of life for patients(49). Moreover, beautification methods are employed not only by women with thalassemia but also by women with breast cancer to conceal chemotherapy side effects(50). Additionally, the stigma associated with the disease causes them to withdraw from social relationships(51). In the mental self, spouses of TM patients reported experiencing instability, low self-esteem, anxiety, distress, and apprehension. Studies have shown that "living in the shadow of anxiety" is a constant presence for these patients, encompassing four categories: "fear of complications," "conflicting opinions about treatment," "uncertain future," and "stigma." Uncertainty is a major psychological stressor for TM patients. Therefore, healthcare providers should consider the challenges and concerns facing patients and develop interventions and strategies to empower patients to cope with uncertainty through appropriate education and communication methods(52). Other studies have also indicated the presence of mood disorders, behavioral disorders, and low self-esteem in these patients(52), significantly impacting their quality of life(53). The instability experienced by some spouses was such that it made them irritable, directing their frustration towards their parents and blaming them for their thalassemia. Studies have shown that some parents of children with TM are unaware of their own minor thalassemia and often proceed with having more children due to cultural and religious issues, which can contribute to parental blame in their children's illness(53). Most spouses of TM patients in the current study attempted to maintain their personal stability and avoid ruminating on grief. This trait has also been observed in the spouses of women undergoing mastectomy and can be considered a modern coping approach(54). In the present study, all spouses accepted their partner's illness fully, which may be attributed to pre-marital awareness(55) and has a positive effect on perceived stress while increasing resilience and improving the quality of life for patients with TM and their families(55). Additionally, in patients and families who better accept the illness, psychosocial functioning tends to be better(56). In the current study, all spouses endeavored to maximize their effectiveness in their shared life, with those who themselves suffered from TM always wishing to be free of this illness. Witnessing the suffering caused by the disease is painful for the spouses and leads to negative changes in their emotional states(57). In the current study, all spouses of TM patients claimed to provide spiritual care but avoided any form of spiritual dryness. Studies have shown that spiritual care contributes to spiritual health and enhances quality of life, which should always be considered alongside physical, mental, and psychological aspects by healthcare providers to achieve holistic care. Furthermore(58), studies have indicated that caregivers need spiritual health to reduce the expression of difficult emotions such as despair, depression, anxiety, and interaction problems(59). All spouses of TM patients in this study placed great importance on the patient's health and the family unit. Studies have shown that individuals' views on health, along with psychological support, the absence of comorbidities, and adherence to regular chelation therapy contribute to enhancing their quality of life. In many cases, factors such as education level, having a suitable job, marriage, economic and social status of patients, and ultimately motivation and hope for life increase for both patients and their spouses(59). The concept of adaptation in spouses of patients with TM is a process in which, despite enduring mental problems, they accept the care and companionship of their spouse by overcoming concerns about the nature of the disease and its complications. In doing this, they receive comprehensive support to take steps towards achieving health for their spouse. One of the most important limitations of the research, which is specific to qualitative research, is the lack of generalizability of the results to other societies. Another perceived limitation was the less attention paid to spouses of patients with TM, which limited the discussion. In addition, given that most of the participants in the study were young, the results may not be able to be generalized to spouses who are in middle age. Conclusion Since adaptation in physical and self-concept dimensions has different meanings in different diseases and societies based on cultural, religious, and value beliefs, participants in the present study stated that a person feels that they have adapted to their illness when they do not suffer from physical, mental, economic, and social problems and have reached a stable state and stable conditions. Therefore, providing comprehensive care from the health team, including psychologists, hematologists, nurses, etc., is essential to help spouses achieve optimal adaptation. Although studies have been conducted in the field of adaptation in some dimensions, the number of these studies that have expressed the views of spouses of patients with TM is very limited, and no new study has been found in Iran in this field, and in fact, a comprehensive look at this issue is new. Research conducted in the world is also limited in this field and has been conducted at different cultural levels. On the other hand, the American Nursing Association strongly recommends centered care in chronic diseases. Ultimately, discovering the concept of adaptation and its dimensions in patients with TM as a new achievement for making appropriate decisions, allocating financial and human resources in research and care for patients with TM, and ultimately increasing the quality of life of patients and their spouses. Declarations Acknowledgements This article is part of a general professional doctoral dissertation which was approved by the Student Research Committeeof Dezful University of Medical Sciences (MED-402117-1402). Herby, the authors would like to thank allparticipants for their cooperation in the research. Footnotes Authors' Contribution : Study concept and design: M.R.; Acquisition of data: M. B.; Analysis and interpretation of data: M. B. B. Sh., Drafting of them anuscript: M.R. and A.M. Conflict of Interests Statement : The authors declared that they have no conflict of interest . 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Molecular genetics & genomic medicine. 2021;9(12):e1788. Ozdemir A, Citak FE, Ersoy M, Sahin S, Kansu E. The Effect of Ferritin Level on Respiratory Functions in Patients with β-Thalassemia Major. Blood. 2023;142:5240. Basanagoudar PL, Thami T, Sharma S, Aggarwal S, Dhillon MS. Prevalence of thalassemic arthropathy in transfusion dependent β-thalassemia patients: an observational study. Journal of Postgraduate Medicine, Education and Research. 2024;58(3):107-10. Shah FT, Sayani F, Trompeter S, Drasar E, Piga A. Challenges of blood transfusions in β-thalassemia. Blood reviews. 2019;37:100588. Alatas ET, Pektas SD, Dogan G, Azik MF. Skin, hair and nail findings in children with beta-thalassemia. 2019. Alijanpour Aghamaleki M, Tamaddoni A, Mahmoodi Nesheli H, Hajiahmadi M, Amouzadeh Samakoush M, Aghajanpour F. Pubertal status and its relation with serum ferritin level in thalassemia major patients. Iranian Journal of Pediatric Hematology and Oncology. 2019;9(1):32-9. 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The effect of fatigue on self-perceived health in patients with hemoglobinopathies in a greek representative sample. Health & Research Journal. 2019;5(1):10-9. Theodorou P, Abdimioti T, Psomiadi M, Krommydas G, Bakalidou D. Quality of life and fatigue in patients with beta-thalassemia following different iron therapy treatments. Archives of Hellenic Medicine/Arheia Ellenikes Iatrikes. 2023;40(6). Chiew JY, Thiruchelvam J, Rahmat MB, William SP, Shafien ZB, Banerjee KG. The key complications of beta thalassemia major: a review and update. Int J Res Med Sci. 2021;9:1846-52. Dhawan M, NT S, Kakkar S. Body image issues and self-concept dilemmas in adolescents living with thalassemia. Psychology, health & medicine. 2022;27(3):598-612. Kotale NN, Wijayanti SPM, Rujito L. Exploring Perceptions of Marriage and Reproductive Health Among Thalassemia Patients in Banyumas Regency. Insights in Public Health Journal. 2024;5(1). Jabeen R, Ansari I, Durrani B, Salman MJ, Mazhar L, Ansari MUH, et al. Exploring the perceptions and experiences of female’s with ß-thalassemia major in a Tertiary Care Private Hospital in Pakistan. Transfusion Clinique et Biologique. 2024;31(4):244-52. Abbasi S, Shahriari M, Ghanavat M, Talakoub S, Asl FSM, Hemati Z. The relation between different aspects of quality of life with coping style in adolescents with thalassemia in comparison to a healthy group. International journal of hematology-oncology and stem cell research. 2020;14(1):19. Shamloo MBB, Elahi N, Shamsi A. Iranian Muslim women's adaptation after mastectomy. International journal of palliative nursing. 2024;30(8):451-63. Derila AN, Stavrou P, Evliati L, Kalkana C, Katsohiraki M. Psychosocial Effects of Iron Chelation on Thalassemia Patients. Hospital Chronicles. 2021;16(2):50-7. Ahmadi M, Gheibizadeh M, Rassouli M, Ebadi A, Asadizaker M, Jahanifar M. Experience of uncertainty in patients with thalassemia major: a qualitative study. International journal of hematology-oncology and stem cell research. 2020;14(4):237. Miri-Aliabad G, Tabatabaei SMN, Vaezi Z, Amini A, Asgarzadeh L. Causes of birth of more than one thalassemia major patient in families in south-east of Iran: lessons for prevention programs. Health Scope. 2021;10(3). Shamloo MBB, Elahi N, Zaker MA, Zarea K, Zareiyan A. Identification of the Physiological Dimension and SelfConcept among Husbands of Iranian Women with Mastectomy; a Directed Content Analysis. The Gulf journal of oncology. 2023;1(42):6-13. Mia MA-T, Islam MR, Sarker A, Shahriar EB, Hasan A, Ayon RA, et al. A Study on Knowledge, Attitudes, Practice and Awareness towards Pre-Marital Carrier Screening of Thalassemia among the University Students of Biological Faculty in Bangladesh: A Cross-Sectional Study. European Journal of Medical and Health Sciences. 2023;5(5):13-9. Chinh K, Secinti E, Johns SA, Hirsh AT, Miller KD, Schneider B, et al., editors. Relations of mindfulness and illness acceptance with psychosocial functioning in patients with metastatic breast cancer and caregivers. Oncology nursing forum; 2020. Bigdeli Shamloo MB, Ashrafizadeh H. Adaptation Process in Husbands of Iranian Women Undergoing Mastectomy From Diagnosis to Terminal Stages of the Disease: A Grounded Theory Study. OMEGA-Journal of Death and Dying. 2024:00302228241245238. Mohammadi SZ, Tajvidi M, Ghazizadeh S. The relationship between spiritual well-being with quality of life and mental health of young adults with beta-thalassemia major. Scientific Journal of Iranian Blood Transfusion Organization. 2014;11(2). Anum J, Dasti R. Caregiver burden, spirituality, and psychological well-being of parents having children with thalassemia. Journal of religion and health. 2016;55:941-55. Table 2 Table 2 is available in the Supplementary Files section. Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6538359","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Article","associatedPublications":[],"authors":[{"id":473426205,"identity":"aa4c8a6b-9464-43cd-9ca1-122519f216df","order_by":0,"name":"Mobin Rahmati","email":"","orcid":"","institution":"Student Research Committee of Dezful University of Medical Sciences","correspondingAuthor":false,"prefix":"","firstName":"Mobin","middleName":"","lastName":"Rahmati","suffix":""},{"id":473426206,"identity":"7fab99de-fd95-4954-b569-295d78083406","order_by":1,"name":"Mahin Behzadifard","email":"","orcid":"","institution":"Department of Medical Laboratory Sciences,","correspondingAuthor":false,"prefix":"","firstName":"Mahin","middleName":"","lastName":"Behzadifard","suffix":""},{"id":473426207,"identity":"0bc96d01-d467-4cad-ba30-2019e205ce8c","order_by":2,"name":"Alireza Momeni","email":"","orcid":"","institution":"Hematology \u0026 Oncology Department of Internal Medicine,School of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Alireza","middleName":"","lastName":"Momeni","suffix":""},{"id":473426208,"identity":"d2c21e36-1c1d-4973-b356-725f3722a9af","order_by":3,"name":"Marzieh Beigom Bigdeli Shamloo","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA2klEQVRIiWNgGAWjYFACHoYDDGwMMmzsDWxQEcYGorTwsPEcIEELA0gLg0QCGwGVUKDbwHvw4JcyGx4+yefPHt1sY5Dnb2Bu+4BPi9kBvoTDMufSeNikc8yNc9sYDGccYGyegV8Lj8FhybbDIC1s0kAtjBsYGJvxOgyq5T8Pm+TxZyAt9kRpOfix7QAPmwSDGUhLImEth4F+YTiXDAxkoF9yzkkkzzhMSMvx3sMff5TZycm3H3/2OKfMxra/vf0xXi0MzEDEg+BKgEUIAsYfRCgaBaNgFIyCEQwALFxBpoJ7uCYAAAAASUVORK5CYII=","orcid":"","institution":"Department of Paramedical","correspondingAuthor":true,"prefix":"","firstName":"Marzieh","middleName":"Beigom Bigdeli","lastName":"Shamloo","suffix":""}],"badges":[],"createdAt":"2025-04-27 06:23:05","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6538359/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6538359/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":86384889,"identity":"2e244896-c2b7-4a1a-88ee-6f6cb748f7a6","added_by":"auto","created_at":"2025-07-10 05:32:49","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":622642,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6538359/v1/8a0eb283-0cb8-4f6e-b3e8-3f05b748367a.pdf"},{"id":85090020,"identity":"9f7f9d1f-b889-43dd-97f0-ac7da66c4b5c","added_by":"auto","created_at":"2025-06-20 22:45:50","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":18916,"visible":true,"origin":"","legend":"","description":"","filename":"Table2.docx","url":"https://assets-eu.researchsquare.com/files/rs-6538359/v1/213ff278d7ef3a2cfacb045c.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Explanation of physical and self-concept dimensions in Spouses of Patients with Major Thalassemia Based on Roy's Theory: A Qualitative Content Analysis Study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThalassemia is a hereditary disease caused by a deficiency in the production of globin chains, leading to ineffective erythropoiesis and hemolysis(1). Thalassemia has varying prevalence across different countries. In Mediterranean countries, the prevalence has increased in Europe and the USA due to migration from the Middle East and Far(2) East. Iran is situated in the thalassemia belt, with 17,342 out of 18,983 hemoglobinopathy patients suffering from TM(3). Notably, 14% of the population over 15 years of age among these patients are married(4)\u003c/p\u003e \u003cp\u003eDamage to the heart, liver, lungs, and endocrine organs occurs due to anemia and iron overload. Anemia and iron accumulation also harm the endocrine organs, leading to hypogonadism and reduced sperm and egg production, necessitating interventions for fertility issues. Additionally, patients may face psychological and social problems due to the congenital nature of the disease and its longevity. The psychosocial challenges and treatment burdens for thalassemia patients are significant(5). Studies indicate that 19.8% of thalassemia patients in Iran suffer from depression, and 23.7% experience anxiety disorders(6, 7). Other research shows that these patients live in constant anxiety(7), driven by fears of the future, stigma, and conflicting treatment opinions, leading to physical and psychological dysfunction that requires social and medical support(8).\u003c/p\u003e \u003cp\u003eOne of the interventions gaining attention in the care of chronic disease patients is the focus on adaptation strategies(9). Adaptation involves continuous changes and cognitive and behavioral efforts to manage internal or external demands, reflecting the reciprocal influence between individuals and their environment. It is described as a process with adaptation as the outcome of this process. During adaptation, an individual's personal perspective on their surroundings is re-established, fostering a meaningful and positive outlook on life(10)\u003c/p\u003e \u003cp\u003eAdaptation is a cognitive process that guides individuals through various needs and challenges following illness, taking place within a social context (11). Both stressors and adaptation variables impact their quality of life. Moreover, employing coping strategies by spouses enhances the adaptation process for patients. Studies have shown that TM patients exhibit maladaptive behaviors affecting their mental health and that of their families. This disease also negatively impacts family members, causing psychological, social, financial, and even physical harm(12). Families, due to the chronic nature of the disease, treatment methods, complications, and mortality associated with the disease, experience burnout(13).\u003c/p\u003e \u003cp\u003eAlthough there is limited research on the adaptation challenges faced by spouses of TM patients, studies indicate patients' distress regarding their treatment leads to maladaptive behaviors(14), with spouses being the most affected individuals. Evidence suggests that adaptation interventions significantly impact the quality of life for both patients and their spouses. Furthermore, according to Roy's theory, caregivers, including spouses and families, should be the focus of care and treatment interventions. Exploring coping and adaptation strategies for patients and their families in chronic illnesses can help develop solutions to enhance their quality of life across physiological, role playing, interdependence, and self-concept dimensions(15). By examining physical and self-concept dimensions, healthcare providers can facilitate patient acceptance and encourage positive coping strategies. Early interventions related to adaptation can lead to better disease management. Therefore, healthcare providers involved in fostering adaptation in these patients need to clarify the physical and self-concept dimensions in their spouses to gather precise information for necessary planning and actions.\u003c/p\u003e"},{"header":"Materials and Methods","content":"\u003cp\u003eThis qualitative study utilized guided content analysis conducted in 1403 at the Thalassemia Ward of Ganjavian Hospital in Dezful. After obtaining permission from the Research Vice-Chancellor of Dezful University of Medical Sciences and submitting it to the hospital director, patients with TM were selected based on inclusion criteria. Purposeful and convenient sampling with maximum diversity regarding age, education level, ethnicity, etc., continued until data saturation was reached. Inclusion criteria for spouses and patients included proficiency in Persian, at least one year of marriage, and adequate physical and mental condition to participate in the interview. Inclusion criteria for therapists included a minimum Bachelor's degree in Nursing or Psychology or a Doctorate in Hematology, with at least one year of experience working with thalassemia patients for those with a Bachelor's degree. Exclusion criteria for patients and spouses included lack of physical or mental readiness to participate in the interview and unwillingness to continue cooperation. Exclusion criteria for therapists included unwillingness to cooperate.\u003c/p\u003e \u003cp\u003e After explaining the purpose of the study, methodology, and ensuring that participants would not be deprived of their treatment if they chose not to cooperate, informed consent was obtained. Interviews were conducted with 11 participants, including TM patients, their spouses, and nurses who met the inclusion criteria. The interviews began with the question, \"How did you adapt to your spouse's illness?\" Follow-up questions included: \"What physical problems have you experienced?\", \"How about your mental state? \".Probing questions were asked based on participants' responses to better understand their experiences.\u003c/p\u003e \u003cp\u003eTo analyze the data, qualitative content analysis using a guided approach based on Roy's theory was employed. Content analysis began immediately after the first interview. The researcher listened to the interviews multiple times and then transcribed them. Analysis commenced with repeated readings of the entire text to immerse in the data and gain an overall sense of it. The researcher aimed to understand the essence of what was expressed in the raw data. Subsequently, to describe and interpret the perceived meaning, the researcher began coding word by word, line by line, or paragraph by paragraph, allowing concepts to emerge from the raw data based on their features and dimensions. The coding and classification of data were not limited to the 2 dimensions of Roy's theory (physical, self-concept) and involved continual oscillation between deductive and inductive reasoning.\u003c/p\u003e \u003cp\u003eThe primary data collection method in this study was semi-structured interviews. Interviews were conducted individually in a calm environment at a suitable time and place (the Thalassemia Clinic training room) where participants felt comfortable. When data saturation was reached, two additional interviews were conducted for further assurance.\u003c/p\u003e \u003cp\u003eTo ensure the validity and reliability of the data, Lincoln and Guba's criteria were employed(16). Prolonged engagement with the topic, participant validation, peer debriefing, and triangulation (using multiple methods for data generation, including interviews and field notes) were utilized to enhance credibility through rich and deep descriptions of the data and an audit trail. All research processes were thoroughly documented.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eTransferability and Trustworthiness\u003c/h2\u003e \u003cp\u003eTo enhance transferability, detailed descriptions of the research context, transcripts, and observed processes were provided to allow for judgment and evaluation by others regarding the applicability of findings. To ensure the accuracy and credibility of the research findings, feedback was sought from participants. The themes derived were returned to participants to confirm whether they accurately reflected their experiences related to adaptation. All themes were validated. Additionally, coding and data analysis were conducted independently by researchers and collaboratively to ensure agreement on the themes.\u003c/p\u003e \u003cp\u003eIn reflectivity, it is important to note that the researcher was aware of the problems of thalassemia patients due to her background in caring for them. While efforts were made to minimize the influence of personal biases during data collection and analysis, the researcher acknowledged that achieving complete objectivity was challenging. To enhance the validity of the findings, the data analysis was reviewed and validated by a co-researcher with extensive experience in qualitative research. The aim of this collaborative approach was to reduce potential biases and ensure more accurate interpretation of the data.\u003c/p\u003e \u003cp\u003eTo protect the participants emotionally, they first prepared themselves and the participant and explained the purpose of the research. Also, the participant's trust and confidence were gained by introducing the interviewer. During the interview, skills such as active listening and feedback were used by the interviewer, and the interviewer tried to empathize with the participant, and the interviewer managed emotions. The participants were assured that if they needed psychological counseling, they would definitely be referred to a counselor at the researcher's expense.\u003c/p\u003e \u003cp\u003e This article is the result of a research project that was approved by the Research Vice-Chancellor of Dezful University of Medical Sciences with the code of ethics IR.DUMS.REC.1403.049049 and it is in accordance with the Declaration of Helsinki. Written informed consent was obtained from all participants.\u003c/p\u003e \u003c/div\u003e"},{"header":"Findings","content":"\u003cp\u003e12 participants took part in this study: 1 caregiver (8%), 4 patients (33.5%), and 7 spouses (58.5%). The average age of participants was 35.4 years, with 6 (50%) being female and 6 (50%) male. Educational levels were as follows: 5 individuals (40.5%) had secondary education, 5 (40.5%) had diplomas, and 2 (19%) had university degrees. Their occupations included 1 (8%) freelancer, 4 (33.5%) housewives, 4 (33.5%) workers, and 3 (25%) employees. Among the 11 patients and spouses, 8 (70%) had spouses with thalassemia, while 3 (30%) had healthy partners. On average, couples had been married for 7.3 years, with 5 (45%) being childless and 6 (55%) having one child(Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographic Characteristics of Participants\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"9\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo.\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eEducation Level\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eOccupation\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eRole\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDuration of Marriage\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNumber of Children\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c9\"\u003e \u003cp\u003eSpouse with Thalassemia?\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e55\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBachelor's\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eCaregiver\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e----\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e------\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e-----\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e26\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDiploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eHousewife\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDiploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eShopkeeper\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDiploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eHousewife\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSecondary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eFreelancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDiploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eHousewife\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eAssociate Degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePrivate Employee\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e46\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDiploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePrivate Employee\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e28\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSecondary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eWorker\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSecondary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eWorker\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSecondary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eWorker\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePatient\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSecondary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eHousewife\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSpouse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eFrom the content analysis of the conducted interviews, 2 main categories emerged: physical, self-perception. Additionally, 15 generic categories, 37 subcategories, and 402 codes were extracted, which, after removing duplicate codes, left 105 codes. In the main physical category, generic categories included activity and rest, absorption and excretion, cardiovascular, respiratory, neurological, immune system, skin and hair, glands, and musculoskeletal systems (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn the generic category of activity and rest, two subcategories of sleep and mobility were identified. In the sleep subcategory, codes for insomnia, frequent waking, and nightmares were extracted. In the mobility subcategory, codes for weakness, fatigue, lethargy, and inability to perform heavy tasks were extracted.\u003c/p\u003e\n\u003cp\u003eParticipant No. 3: \u003cem\u003e\u0026quot;Because of anemia, I get tired quickly, especially when I\u0026rsquo;m close to my next blood transfusion. My parents manage my brain.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of absorption and excretion, subcategories of absorption disorder, dietary habits, bowel movements, and water and electrolytes were identified. In the absorption disorder subcategory, codes for weight loss, loss of appetite, and increased iron absorption were extracted. In the dietary habits subcategory, codes for reduced consumption of iron-rich foods, reduced consumption of vitamin C-rich foods, and increased consumption of dairy products were extracted.\u003c/p\u003e\n\u003cp\u003eP. 4: \u003cem\u003e\u0026quot;We only eat red meat once a week.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the bowel movements subcategory, codes for diarrhea and constipation were extracted.\u003c/p\u003e\n\u003cp\u003eP5: \u0026quot;\u003cem\u003eI mostly suffer from constipation.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the water and electrolytes subcategory, codes for thirst, calcium deficiency, high serum phosphate, iron overload, leg swelling, and discontinuation of Desferal during pregnancy were extracted.\u003c/p\u003e\n\u003cp\u003eP4: \u003cem\u003e\u0026quot;The doctor told me that my iron levels should be regulated before pregnancy because we have to stop it during pregnancy.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of cardiovascular, three subcategories of vessels, heart, and blood were identified. In the vessels subcategory, codes for hypotension, difficulty accessing veins, cerebral vascular occlusion, and coronary artery occlusion were extracted.\u003c/p\u003e\n\u003cp\u003eP3: \u003cem\u003e\u0026quot;Even though I\u0026rsquo;m 39, I\u0026rsquo;ve had a stroke, and my right side is paralyzed.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the heart subcategory, codes for tachycardia, heart pain, heart failure, and cardiomyopathy were extracted. In the blood subcategory, codes for reduced red blood cell lifespan, frequent blood transfusions, and anemia were extracted.\u003c/p\u003e\n\u003cp\u003eP12: \u003cem\u003e\u0026quot;Because of my anemia, I have to come every month for a blood transfusion.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of respiratory, two subcategories of pulmonary problems and breathing pattern disorders were identified. In the pulmonary problems subcategory, codes for pulmonary hemosiderosis and pulmonary hypertension were extracted. In the breathing pattern disorders subcategory, codes for shortness of breath, inability to breathe deeply, and increased respiratory rate were extracted.\u003c/p\u003e\n\u003cp\u003eP8: \u003cem\u003e\u0026quot;I can\u0026rsquo;t do my tasks quickly because I run out of breath.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of neurological, two subcategories of somatic pain and sensory reception disorders were identified. The somatic pain subcategory included codes for leg pain, back pain, abdominal pain, and headache.\u003c/p\u003e\n\u003cp\u003eP12: \u003cem\u003e\u0026quot;When I see my husband suffering, my headache gets worse. I have migraines.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe sensory reception disorders subcategory included codes for tingling in the extremities, warmth in the extremities, numbness in the extremities, and hemiplegia.\u003c/p\u003e\n\u003cp\u003eP7: \u003cem\u003e\u0026quot;When I work, my hands tingle.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of the immune system, two subcategories of humeral and cellular were identified. In the humeral subcategory, codes for pneumococcal and meningococcal vaccination, reaction to blood transfusion, susceptibility to infectious diseases, and sensitivity to Iranian Desferal were extracted.\u003c/p\u003e\n\u003cp\u003eP8: \u003cem\u003e\u0026quot;Every year in September, we get pneumococcal and flu vaccines because our immunity is low.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the cellular subcategory, codes for susceptibility to cancer and increased likelihood of transplant rejection were extracted.\u003c/p\u003e\n\u003cp\u003eP1: \u003cem\u003e\u0026quot;Although most of our patients die from heart and liver failure, the rate of cancer among them is also higher than in the general population.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of skin and hair, two subcategories of skin and hair were identified. In the skin subcategory, codes for skin darkening and dry skin were extracted. In the hair subcategory, codes for hair loss and thinning hair were extracted.\u003c/p\u003e\n\u003cp\u003eP7: \u003cem\u003e\u0026quot;I don\u0026rsquo;t like the color of my skin because it has turned brown.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of glands, two subcategories of endocrine and exocrine glands were identified. In the endocrine subcategory, codes for diabetes, decreased libido, ovulation disorders, reduced sperm motility, oligospermia, and menstrual disorders were extracted.\u003c/p\u003e\n\u003cp\u003eP10: \u003cem\u003e\u0026quot;My wife has diabetes.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eP12: \u003cem\u003e\u0026quot;I had ovulation problems, so I took medication to get pregnant.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the exocrine subcategory, codes for liver failure, elevated liver enzymes, hepatomegaly, and splenomegaly were extracted.\u003c/p\u003e\n\u003cp\u003eP8: \u003cem\u003e\u0026quot;I get blood tests every month because my liver enzymes are high.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of musculoskeletal, two subcategories of muscular and skeletal systems were identified. In the muscular subcategory, codes for muscle cramps and muscle pain were extracted.\u003c/p\u003e\n\u003cp\u003eP3: \u0026quot;\u003cem\u003eWhen I wake up, my legs cramp.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the skeletal subcategory, codes for osteoporosis and enlargement of flat bones were extracted.\u003c/p\u003e\n\u003cp\u003eP1: \u0026quot;\u003cem\u003eMost of our patients have wide faces and foreheads.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the main category of self-perception, generic categories of physical self, interpersonal self, mental self, ideal self, and spiritual-ethical self were identified. In the generic category of physical self, two subcategories of experiencing physical weakness and body dysmorphia were identified. In the experiencing physical weakness subcategory, codes for fatigue from frequent blood transfusion sessions and feeling of energy loss were extracted.\u003c/p\u003e\n\u003cp\u003eP11: \u003cem\u003e\u0026quot;My energy runs out quickly, and I get tired.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the body dysmorphia subcategory, codes for feeling boxy-faced and skin darkening were extracted.\u003c/p\u003e\n\u003cp\u003eP7: \u003cem\u003e\u0026quot;I feel very ugly because my face is rectangular and wide.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of interpersonal self, subcategories of unempathetic behavior and social withdrawal were identified. In the unempathetic behavior subcategory, codes for being mocked by others and lack of understanding of physical and mental conditions were extracted.\u003c/p\u003e\n\u003cp\u003eP7: \u0026quot;\u003cem\u003eAt work, whenever my boss pays more attention to me or gives me overtime, my colleagues say, \u0026apos;Oh, because of your illness, they\u0026rsquo;re giving you this money!\u0026apos;\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the social withdrawal subcategory, codes for covering skin color with makeup, using face masks, and reluctance to attend social gatherings were extracted.\u003c/p\u003e\n\u003cp\u003eP3: \u003cem\u003e\u0026quot;Most of the time, I wear a mask, even when I come to the clinic for a blood transfusion. I draw the curtains so no one sees me.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of mental self, subcategories of instability, low self-esteem, anxiety, experienced attitude, grief, fear, maintaining stability, and accepting the issue were identified. In the instability subcategory, codes for expressing anger towards parents and irritability were extracted.\u003c/p\u003e\n\u003cp\u003eP3: \u0026quot;\u003cem\u003eWhen I get very upset, I yell at my parents and say, \u0026apos;It\u0026rsquo;s your fault I was born and have to suffer so much\u003c/em\u003e.\u0026apos;\u0026quot;\u003c/p\u003e\n\u003cp\u003eIn the low self-esteem subcategory, codes for self-defeat and self-deprecation were extracted.\u003c/p\u003e\n\u003cp\u003eP4: \u0026quot;\u003cem\u003eThe way thalassemia is viewed in our country is so negative that we\u0026rsquo;ve lost ourselves.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the anxiety subcategory, codes for worry about the future of the disease and its consequences in the patient and concern about ambiguity in treatment in the country were extracted.\u003c/p\u003e\n\u003cp\u003eP4: \u003cem\u003e\u0026quot;I\u0026rsquo;m always worried about what will happen if our medications aren\u0026rsquo;t imported and we can\u0026rsquo;t buy them.\u003c/em\u003e\u0026quot;\u003c/p\u003e\n\u003cp\u003eIn the experienced attitude subcategory, codes for simplistic view of thalassemia major, ignoring the patient\u0026rsquo;s abilities, and instrumental view in national productions were extracted.\u003c/p\u003e\n\u003cp\u003eP6: \u0026quot;\u003cem\u003eThey\u0026rsquo;ve turned us into their lab rats under the name of national drug production, selling us their drugs that have no effectiveness.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the grief subcategory, codes for distress over treatment side effects and distress over economic pressure were extracted.\u003c/p\u003e\n\u003cp\u003eP. 7: \u003cem\u003e\u0026quot;Every time I go to buy medication, it\u0026rsquo;s more expensive. It\u0026rsquo;s really upsetting.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the fear subcategory, codes for fear of social instability during continued treatment, fear of the disease and its complications, and fear of not being able to afford medication were extracted.\u003c/p\u003e\n\u003cp\u003eP3: \u0026quot;\u003cem\u003eI always have this fear that our medications won\u0026rsquo;t be imported, or we won\u0026rsquo;t be able to buy them.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the maintaining stability subcategory, codes for introversion and avoiding rumination on sorrow were extracted.\u003c/p\u003e\n\u003cp\u003eP11: \u003cem\u003e\u0026quot;My wife doesn\u0026rsquo;t bring anything up to me.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the accepting the issue subcategory, codes for accepting the disease and its complications and surrendering to fate were extracted.\u003c/p\u003e\n\u003cp\u003eP12: \u0026quot;\u003cem\u003eWhen I tested positive, I accepted the condition because it was like me.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of ideal self, subcategories of advancing health and seeking love with a world of health were identified. In the advancing health subcategory, codes for achieving desired health and maintaining maximum efficiency were extracted.\u003c/p\u003e\n\u003cp\u003eIn the seeking love with a world of health subcategory, codes for wishing for health in the future and wishing to live happily were extracted.\u003c/p\u003e\n\u003cp\u003eP7: \u003cem\u003e\u0026quot;I always wish for health and happiness for all people and for ourselves.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn the generic category of spiritual-ethical self, two subcategories of spiritual care and transcendence of values were identified. In the spiritual care subcategory, codes for strengthening the spiritual dimension through reliance on God and the Imams and avoiding spiritual dryness were extracted. In the transcendence of values subcategory, codes for valuing health and valuing family were extracted.\u003c/p\u003e\n\u003cp\u003eP2: \u003cem\u003e\u0026quot;My husband cares a lot about me and spares no effort to achieve my health.\u0026quot;\u003c/em\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eA review of previous studies indicates that most research has been conducted on thalassemia patients (TM) and their parents, suggesting that, given their potential for marriage, their spouses have been overlooked. The expectation of having a family is an important component and a noble goal for a better quality of life for most adults with beta TM. Additionally, therapeutic advancements have led to significant increases in survival rates and improvements in the quality of life and fertility of patients with beta T(17).\u003c/p\u003e \u003cp\u003eIn the current study, some spouses who themselves suffer from TM experienced sleep disorders such as insomnia, frequent awakenings, and nightmares. Other studies have shown that the quality of sleep in these patients is lower than that of the general population and is directly related to general health(18). Factors such as high ferritin levels and heart failure exacerbate insomnia(19). Furthermore, some spouses with TM reported weakness, fatigue, and inability to perform heavy tasks, attributed to iron overload(20). Additionally, changes in the nasal and facial bones can lead to sleep apnea for them(21).\u003c/p\u003e \u003cp\u003eMoreover, in this study, all spouses who were themselves affected by TM suffered from increased iron absorption, and some experienced weight loss and loss of appetite secondary to iron overload. Studies have indicated that malnutrition is commonly present in TM patients, manifesting as deficiencies in calcium, vitamin D, vitamin E, and zinc, leading to reduced muscle mass, decreased bone density, and short stature(22).\u003c/p\u003e \u003cp\u003eIn the current study, all spouses affected by TM adhered to dietary restrictions, reducing the intake of iron-rich foods, limiting vitamin C-rich foods, and increasing dairy consumption to prevent further iron absorption and slow down the process of osteoporosis. Some spouses reported constipation as a delay in bowel movements. Thalassemia patients have biliary motility disorders with delayed small bowel transit due to iron overload(23).\u003c/p\u003e \u003cp\u003eThe present study also noted changes in water and electrolyte levels in spouses with TM, primarily manifesting as hypocalcemia and iron overload. Studies have shown that one of the complications of thalassemia is hypocalcemia, which presents with paresthesia, muscle spasms, and low serum calcium. Iron overload, drug side effects, vitamin D3 deficiency, genetic disorders, and polymorphisms are causes of hypocalcemia(24). In some cases, they also complained of leg edema, which could be due to hepatomegaly, splenomegaly, liver failure, and heart failure(25).\u003c/p\u003e \u003cp\u003eIn female spouses with TM who had given birth, discontinuation of desferrioxamine during pregnancy was experienced. However, serum iron control was performed before pregnancy. Studies indicate that the use of deferoxamine in the first trimester does not cause adverse effects on the fetus, but emphasize its greater benefits for the mother over its fetal side effects(26). If chelation therapy is discontinued during pregnancy, it should be resumed after childbirth, as the risk of iron accumulation in the liver and heart increases during pregnancy(27).\u003c/p\u003e \u003cp\u003eIn the current study, vascular problems were experienced by some spouses with TM, manifesting as cerebral and coronary artery occlusions. Ischemic cerebrovascular events in thalassemia patients are categorized into overt strokes and silent cerebral infarcts. Overt strokes often occur in patients with beta TM(28). Additionally, thromboembolic events in non-transfusion-dependent thalassemia are more frequent than in transfusion-dependent beta thalassemia. A combination of hypercoagulable states, including abnormalities in red blood cells and platelets, antithrombin III, protein C and S, and splenectomy, are involved in thrombotic events. Moreover, neurological complications attributed to various factors include chronic hypoxia, iron overload, bone marrow expansion, and neurotoxicity from desferrioxamine(28). Neuropathy and myopathy, along with a predisposition to hypercoagulation, lead to strokes and cardiac events(29).\u003c/p\u003e \u003cp\u003eIn the present study, cardiac problems in some spouses with TM manifested as tachycardia, chest pain, heart failure, cardiomyopathy, and arrhythmias. Studies have shown that cardiac complications are a leading cause of mortality in β-TM patients, although significant and progressive increases in life expectancy have been demonstrated following the introduction of chelation therapies. Iron overload is the primary cause of cardiac damage, leading to thalassemia cardiomyopathy, where diastolic dysfunction typically occurs before systolic dysfunction and overt heart failure(30). Although iron-induced cardiomyopathy progresses slowly and may take several decades for clinical and laboratory features of cardiac dysfunction to become apparent, arrhythmias or sudden death may occur without signs of heart disease, and only in the presence of myocardial siderosis(31).\u003c/p\u003e \u003cp\u003eIn the current study, blood-related issues in some spouses with TM manifested as anemia, necessitating repeated blood transfusions. This is due to the pathology of the disease. Thalassemia is an inherited hematologic disorder characterized by reduced or absent synthesis of one or more globin chain types. Beta thalassemia results from one or more mutations in the beta-globin gene. The absence or reduction of beta-globin chains leads to ineffective erythropoiesis, resulting in anemia. TM can be treated through regular blood transfusions, bone marrow transplants, iron chelation management, hematopoietic stem cell transplants, stimulation of fetal hemoglobin production, and gene therapy(32).\u003c/p\u003e \u003cp\u003eIn the current study, respiratory issues in some spouses with TM manifested as shortness of breath, pulmonary hypertension, and pulmonary siderosis. Patients with β-TM may accumulate iron in the interstitial area of the lungs, potentially leading to fibrosis and lung dysfunction over time. The majority reported a restrictive pattern of respiratory dysfunction in thalassemia patients. Additionally, some studies have indicated mild to moderate obstruction in small airways and reduced diffusion capacity with increased thickness of the alveolar-capillary membrane in older ages, gradually reducing the respiratory capacities of these patients.(33)\u003c/p\u003e \u003cp\u003eNeurological issues in some spouses with TM included limb pain, abdominal pain, numbness, paresthesia, and plegia. Pain is a newly emerging complication in thalassemia. Limb pain may arise due to vitamin D deficiency and arthropathy(34). Furthermore, thalassemia patients are at risk of developing cholelithiasis, portal vein thrombosis, mesenteric artery thrombosis, nephrolithiasis, and Yersinia infections, which can cause abdominal pain(25). Additionally, extramedullary hematopoiesis, sensory, auditory, and visual stimulation, neuropathy, myopathy, and a predisposition to hypercoagulation can lead to strokes in these patients, leaving behind signs of paresthesia and plegia(29).\u003c/p\u003e \u003cp\u003eIn the current study, immune system function in spouses with TM was altered, making them susceptible to infectious diseases, prompting them to receive annual vaccinations such as influenza and pneumococcal vaccines for prevention. Studies have shown that abnormalities related to beta thalassemia in the innate immune system include reduced levels of complement, properdin, and lysozyme, decreased absorption and phagocytic capacity of polymorphonuclear neutrophils, chemotaxis disorders, and alterations in intracellular metabolic processes, all leading to immune system weakening. The main factors contributing to such changes include iron overload, phenotypic and functional abnormalities of immune cells due to oxidative stress, chronic inflammation, multiple blood transfusions, iron chelation therapy, and splenectomy.(29).\u003c/p\u003e \u003cp\u003eAdditionally, spouses with TM in the current study experienced transfusion reactions, often due to alloimmunization, especially in rare blood group subtypes. Factors such as a lack of voluntary blood donors, poor awareness of thalassemia, absence of national blood policies, and scattered blood services contribute to a significant gap between timely supply and demand for healthy blood. In many centers, antigen testing is insufficient, even for common red blood cell antigens like CcEe and Kell, leading to increased transfusion reactions(35).\u003c/p\u003e \u003cp\u003eIn the current study, spouses with TM often experienced sensitivity to Iranian desferrioxamine or an inability to consume it. Research on the efficacy of Iranian versus foreign desferrioxamine or reactions to this medication has not been found.\u003c/p\u003e \u003cp\u003eIn the present study, spouses with TM reported experiences of skin darkening and dryness, and to a lesser extent, thinning and reduced hair density. Studies have shown that the most common finding in skin examinations of these patients is skin dryness followed by pigmentation disorder(36).\u003c/p\u003e \u003cp\u003eIn the current study, some spouses with TM experienced endocrine dysfunctions such as diabetes, reduced libido, ovulatory disorders, decreased sperm motility, oligospermia, and menstrual irregularities. Studies have shown that despite normal serum ferritin levels, there is a delay in puberty in these patients(37). Moreover, elevated serum ferritin levels lead to decreased levels of testosterone, estradiol, luteinizing hormone, and follicle-stimulating hormone, causing disruptions in puberty, secondary sexual characteristics, menstrual disorders, and fertility. Organized education, alongside good iron chelation, especially during puberty, can reduce oxidative damage and related complications in thalassemia patients(38).\u003c/p\u003e \u003cp\u003eIn some spouses with TM, liver dysfunctions were observed, manifesting as elevated liver enzymes, liver failure, and hepatomegaly. Elevated serum ferritin levels lead to increased liver enzymes. Furthermore, high ferritin levels cause liver siderosis, liver fibrosis, and liver failure(39).\u003c/p\u003e \u003cp\u003eIn the present study, spouses with TM experienced complications such as facial and forehead widening, osteoporosis, muscle cramps, and reduced muscle mass. Some also showed increased fat mass. Studies have indicated that increased transverse head dimensions, narrowing of the mandible, shortening of the mandible ramus, flattening of the nasal bridge, narrowing of the nasal root, orbital hypertelorism, and proptosis occur in these patients(40). In the context of osteoporosis, these patients face significant challenges, although their hyperactive parathyroid hormone makes them susceptible to osteoporosis; the likelihood of developing osteoporosis is not necessarily higher(40). On the other hand, some studies have noted a high prevalence of osteoporosis among them(41). Low levels of vitamin D and calcium can lead to muscle cramps. Other studies have also pointed to reduced muscle mass and sarcopenic obesity(42).\u003c/p\u003e \u003cp\u003eIn the current study, the self-concept category included five subcategories: physical self, mental self, interpersonal self, spiritual-ethical self, and ideal self. In the physical self, experiences of bodily weakness were reported among spouses with TM. Fatigue is recognized as a very common symptom in thalassemia patients, impacting their perceived health(43) and reducing their quality of life. Adequate nursing care and targeted socio-political interventions are necessary to help them achieve the highest possible quality of life(44).\u003c/p\u003e \u003cp\u003eIn the current study, spouses with TM sometimes described their appearance as unattractive due to having brown skin and boxy faces. The most common complication of thalassemia due to abnormal hematopoiesis is dental occlusion, forehead widening, and a squirrel-like face(45), leading them to feel dissatisfied with their appearance(46).\u003c/p\u003e \u003cp\u003eSpouses involved in the present study reported experiencing non-empathetic behaviors and avoidance in the interpersonal self, particularly among those who themselves were affected by the disease. They experienced non-empathetic behaviors as a lack of understanding of their physical and mental conditions and being ridiculed by those around them. While thalassemia patients wishing to start a family face many challenges and require collective support from society and caregivers to lead normal lives(47). Additionally, depression, social isolation, limited access to insurance services, challenges in educational and occupational fields, and difficulties in nurturing social relationships are among the problems faced by these patients(48).\u003c/p\u003e \u003cp\u003eSpouses in the current study often attempted to conceal their faces with masks in social gatherings or avoided attending gatherings altogether. Women also reported using whitening creams to hide skin darkening. Studies have shown that emotion-focused approaches like avoidance and distancing can enhance the quality of life for patients(49). Moreover, beautification methods are employed not only by women with thalassemia but also by women with breast cancer to conceal chemotherapy side effects(50). Additionally, the stigma associated with the disease causes them to withdraw from social relationships(51).\u003c/p\u003e \u003cp\u003eIn the mental self, spouses of TM patients reported experiencing instability, low self-esteem, anxiety, distress, and apprehension. Studies have shown that \"living in the shadow of anxiety\" is a constant presence for these patients, encompassing four categories: \"fear of complications,\" \"conflicting opinions about treatment,\" \"uncertain future,\" and \"stigma.\" Uncertainty is a major psychological stressor for TM patients. Therefore, healthcare providers should consider the challenges and concerns facing patients and develop interventions and strategies to empower patients to cope with uncertainty through appropriate education and communication methods(52). Other studies have also indicated the presence of mood disorders, behavioral disorders, and low self-esteem in these patients(52), significantly impacting their quality of life(53).\u003c/p\u003e \u003cp\u003eThe instability experienced by some spouses was such that it made them irritable, directing their frustration towards their parents and blaming them for their thalassemia. Studies have shown that some parents of children with TM are unaware of their own minor thalassemia and often proceed with having more children due to cultural and religious issues, which can contribute to parental blame in their children's illness(53).\u003c/p\u003e \u003cp\u003eMost spouses of TM patients in the current study attempted to maintain their personal stability and avoid ruminating on grief. This trait has also been observed in the spouses of women undergoing mastectomy and can be considered a modern coping approach(54).\u003c/p\u003e \u003cp\u003eIn the present study, all spouses accepted their partner's illness fully, which may be attributed to pre-marital awareness(55) and has a positive effect on perceived stress while increasing resilience and improving the quality of life for patients with TM and their families(55). Additionally, in patients and families who better accept the illness, psychosocial functioning tends to be better(56).\u003c/p\u003e \u003cp\u003eIn the current study, all spouses endeavored to maximize their effectiveness in their shared life, with those who themselves suffered from TM always wishing to be free of this illness. Witnessing the suffering caused by the disease is painful for the spouses and leads to negative changes in their emotional states(57).\u003c/p\u003e \u003cp\u003eIn the current study, all spouses of TM patients claimed to provide spiritual care but avoided any form of spiritual dryness. Studies have shown that spiritual care contributes to spiritual health and enhances quality of life, which should always be considered alongside physical, mental, and psychological aspects by healthcare providers to achieve holistic care. Furthermore(58), studies have indicated that caregivers need spiritual health to reduce the expression of difficult emotions such as despair, depression, anxiety, and interaction problems(59).\u003c/p\u003e \u003cp\u003eAll spouses of TM patients in this study placed great importance on the patient's health and the family unit. Studies have shown that individuals' views on health, along with psychological support, the absence of comorbidities, and adherence to regular chelation therapy contribute to enhancing their quality of life. In many cases, factors such as education level, having a suitable job, marriage, economic and social status of patients, and ultimately motivation and hope for life increase for both patients and their spouses(59).\u003c/p\u003e \u003cp\u003eThe concept of adaptation in spouses of patients with TM is a process in which, despite enduring mental problems, they accept the care and companionship of their spouse by overcoming concerns about the nature of the disease and its complications. In doing this, they receive comprehensive support to take steps towards achieving health for their spouse.\u003c/p\u003e \u003cp\u003eOne of the most important limitations of the research, which is specific to qualitative research, is the lack of generalizability of the results to other societies. Another perceived limitation was the less attention paid to spouses of patients with TM, which limited the discussion. In addition, given that most of the participants in the study were young, the results may not be able to be generalized to spouses who are in middle age.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eSince adaptation in physical and self-concept dimensions has different meanings in different diseases and societies based on cultural, religious, and value beliefs, participants in the present study stated that a person feels that they have adapted to their illness when they do not suffer from physical, mental, economic, and social problems and have reached a stable state and stable conditions. Therefore, providing comprehensive care from the health team, including psychologists, hematologists, nurses, etc., is essential to help spouses achieve optimal adaptation.\u003c/p\u003e \u003cp\u003eAlthough studies have been conducted in the field of adaptation in some dimensions, the number of these studies that have expressed the views of spouses of patients with TM is very limited, and no new study has been found in Iran in this field, and in fact, a comprehensive look at this issue is new. Research conducted in the world is also limited in this field and has been conducted at different cultural levels. On the other hand, the American Nursing Association strongly recommends centered care in chronic diseases. Ultimately, discovering the concept of adaptation and its dimensions in patients with TM as a new achievement for making appropriate decisions, allocating financial and human resources in research and care for patients with TM, and ultimately increasing the quality of life of patients and their spouses.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp dir=\"RTL\" style=\"text-align: left;\"\u003e\u003cstrong\u003e\u003cspan dir=\"LTR\"\u003eAcknowledgements\u003c/span\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis article is part of a general professional doctoral dissertation which was approved by the Student Research Committeeof Dezful University of Medical Sciences (MED-402117-1402). Herby, the authors would like to thank allparticipants for their cooperation in the research.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFootnotes\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; Contribution\u003c/strong\u003e\u003cstrong\u003e\u003cspan dir=\"RTL\"\u003e:\u003c/span\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStudy concept and design: M.R.; Acquisition of data: M. B.; Analysis and interpretation of data: M. B. B. Sh., Drafting of them anuscript: M.R. and A.M.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of Interests Statement\u003c/strong\u003e\u003cstrong\u003e\u003cspan dir=\"RTL\"\u003e:\u003c/span\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declared that they have no conflict of interest\u003cstrong\u003e\u003cspan dir=\"RTL\"\u003e.\u003c/span\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding/Support\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn none of the stages of research and publication of the article open access to that project has not been financially supported.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003cstrong\u003eData Availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe dataset presented in the study is available on request from the corresponding author during submission or after its publication\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eInformed Consent\u003c/strong\u003e\u003cstrong\u003e\u003cspan dir=\"RTL\"\u003e:\u003c/span\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWritten informed consent was obtained from all participants\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eRiza M, Mulatsih S, Triasih R. 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Nutritional status in a sample of patients with \u0026beta;-thalassemia major. Cureus. 2022;14(8).\u003c/li\u003e\n\u003cli\u003eAslani E, Kattamis A, Lyrakos G, Andriopoulos P, Tsironi M. The effect of fatigue on self-perceived health in patients with hemoglobinopathies in a greek representative sample. Health \u0026amp; Research Journal. 2019;5(1):10-9.\u003c/li\u003e\n\u003cli\u003eTheodorou P, Abdimioti T, Psomiadi M, Krommydas G, Bakalidou D. Quality of life and fatigue in patients with beta-thalassemia following different iron therapy treatments. Archives of Hellenic Medicine/Arheia Ellenikes Iatrikes. 2023;40(6).\u003c/li\u003e\n\u003cli\u003eChiew JY, Thiruchelvam J, Rahmat MB, William SP, Shafien ZB, Banerjee KG. The key complications of beta thalassemia major: a review and update. Int J Res Med Sci. 2021;9:1846-52.\u003c/li\u003e\n\u003cli\u003eDhawan M, NT S, Kakkar S. Body image issues and self-concept dilemmas in adolescents living with thalassemia. Psychology, health \u0026amp; medicine. 2022;27(3):598-612.\u003c/li\u003e\n\u003cli\u003eKotale NN, Wijayanti SPM, Rujito L. Exploring Perceptions of Marriage and Reproductive Health Among Thalassemia Patients in Banyumas Regency. Insights in Public Health Journal. 2024;5(1).\u003c/li\u003e\n\u003cli\u003eJabeen R, Ansari I, Durrani B, Salman MJ, Mazhar L, Ansari MUH, et al. Exploring the perceptions and experiences of female\u0026rsquo;s with \u0026szlig;-thalassemia major in a Tertiary Care Private Hospital in Pakistan. Transfusion Clinique et Biologique. 2024;31(4):244-52.\u003c/li\u003e\n\u003cli\u003eAbbasi S, Shahriari M, Ghanavat M, Talakoub S, Asl FSM, Hemati Z. The relation between different aspects of quality of life with coping style in adolescents with thalassemia in comparison to a healthy group. International journal of hematology-oncology and stem cell research. 2020;14(1):19.\u003c/li\u003e\n\u003cli\u003eShamloo MBB, Elahi N, Shamsi A. Iranian Muslim women\u0026apos;s adaptation after mastectomy. International journal of palliative nursing. 2024;30(8):451-63.\u003c/li\u003e\n\u003cli\u003eDerila AN, Stavrou P, Evliati L, Kalkana C, Katsohiraki M. Psychosocial Effects of Iron Chelation on Thalassemia Patients. Hospital Chronicles. 2021;16(2):50-7.\u003c/li\u003e\n\u003cli\u003eAhmadi M, Gheibizadeh M, Rassouli M, Ebadi A, Asadizaker M, Jahanifar M. Experience of uncertainty in patients with thalassemia major: a qualitative study. International journal of hematology-oncology and stem cell research. 2020;14(4):237.\u003c/li\u003e\n\u003cli\u003eMiri-Aliabad G, Tabatabaei SMN, Vaezi Z, Amini A, Asgarzadeh L. Causes of birth of more than one thalassemia major patient in families in south-east of Iran: lessons for prevention programs. Health Scope. 2021;10(3).\u003c/li\u003e\n\u003cli\u003eShamloo MBB, Elahi N, Zaker MA, Zarea K, Zareiyan A. Identification of the Physiological Dimension and SelfConcept among Husbands of Iranian Women with Mastectomy; a Directed Content Analysis. The Gulf journal of oncology. 2023;1(42):6-13.\u003c/li\u003e\n\u003cli\u003eMia MA-T, Islam MR, Sarker A, Shahriar EB, Hasan A, Ayon RA, et al. A Study on Knowledge, Attitudes, Practice and Awareness towards Pre-Marital Carrier Screening of Thalassemia among the University Students of Biological Faculty in Bangladesh: A Cross-Sectional Study. European Journal of Medical and Health Sciences. 2023;5(5):13-9.\u003c/li\u003e\n\u003cli\u003eChinh K, Secinti E, Johns SA, Hirsh AT, Miller KD, Schneider B, et al., editors. Relations of mindfulness and illness acceptance with psychosocial functioning in patients with metastatic breast cancer and caregivers. Oncology nursing forum; 2020.\u003c/li\u003e\n\u003cli\u003eBigdeli Shamloo MB, Ashrafizadeh H. Adaptation Process in Husbands of Iranian Women Undergoing Mastectomy From Diagnosis to Terminal Stages of the Disease: A Grounded Theory Study. OMEGA-Journal of Death and Dying. 2024:00302228241245238.\u003c/li\u003e\n\u003cli\u003eMohammadi SZ, Tajvidi M, Ghazizadeh S. The relationship between spiritual well-being with quality of life and mental health of young adults with beta-thalassemia major. Scientific Journal of Iranian Blood Transfusion Organization. 2014;11(2).\u003c/li\u003e\n\u003cli\u003eAnum J, Dasti R. Caregiver burden, spirituality, and psychological well-being of parents having children with thalassemia. Journal of religion and health. 2016;55:941-55.\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Table 2","content":"\u003cp\u003eTable 2 is available in the Supplementary Files section.\u003c/p\u003e\n"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Major thalassemia, adaptation, content analysis, spouses","lastPublishedDoi":"10.21203/rs.3.rs-6538359/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6538359/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eBackground and Objective: Major thalassemia is a congenital blood disorder caused by a defect in the hemoglobin chain, leading to anemia and increased iron load, which can affect all organs. The complications arising from thalassemia impact various aspects of the patient's life. Spouses, as informal caregivers, need to adapt to their partner's condition to enhance their quality of life. This study aims to Explanation of physical and self-concept dimensions in spouses of patients with TM in Dezful County.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e In this guided content analysis based on Roy's theory, in-depth interviews were conducted with 12 eligible participants regarding their adaptation experiences. The researcher recorded and transcribed their responses. After multiple readings of the participants' statements, codes were extracted and organized into subcategories, generic categories, and main categories based on semantic proximity. Content analysis was performed using the methods of Elo and Kyngäs, with a back-and-forth approach between inductive and deductive reasoning.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFindings:\u003c/strong\u003e 2 main categories emerged from the data analysis: physical, self-concept. Additionally, 15 generic categories, 37 subcategories, and 105 codes were extracted, resulting in 147 unique codes after removing duplicates.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion:\u003c/strong\u003e This research revealed that spouses who are themselves affected by TM experience greater physical and psychological challenges that highlighting the necessity for effective policies to provide comprehensive support for patients and their spouses.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eClinical trial number:\u003c/strong\u003e not applicable.\u003c/p\u003e","manuscriptTitle":"Explanation of physical and self-concept dimensions in Spouses of Patients with Major Thalassemia Based on Roy's Theory: A Qualitative Content Analysis Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-20 22:45:45","doi":"10.21203/rs.3.rs-6538359/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"88181081-84af-4038-8d23-0e91d2194329","owner":[],"postedDate":"June 20th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":50276956,"name":"Health sciences/Diseases/Haematological diseases/Anaemia"},{"id":50276957,"name":"Health sciences/Health care/Quality of life"}],"tags":[],"updatedAt":"2025-07-10T05:24:12+00:00","versionOfRecord":[],"versionCreatedAt":"2025-06-20 22:45:45","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6538359","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6538359","identity":"rs-6538359","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}